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26 July 2013

It could be seen as petty, but one of the things I miss most about not having a neurotypical kid in Liam is the ability to take his picture.

Of course I can take smiley pictures all day long of him lying on the floor or sitting in his wheelchair. He smiles. A lot. But that's it. We can't go take pretty posed pictures at the park or the railroad track. No fun pictures of him with his siblings in silly poses. No family pictures hanging out at the river or the lake.

Looking at all the family poses repinned on Pinterest gets me melancholy because we can't ever do pictures like that. Liam can't ever pose for a photo.

I miss being able to huddle everyone together and snap a quick picture.

Liam can't see where the camera is.
He can't lift his head and hold it up to smile.
He hits people in close vicinity because his arms fly up all the time which means nicely styled hair and outfits can quickly look wild.
Sometimes he drools.

I concede that it's a small thing, but still something that isn't typical for us anymore.

17 July 2013

What happens when you don't fit in specifically anywhere and yet everywhere? It's a question I pondered with my friend this past week and has had me ruminating over ever since.

Friendships develop and are cultivated over time because of shared memories, experiences, trials, and just a genuine love of and for the other person. Some friendships are forged through tragedies, life altering experiences, health issues, common interests and just for want of companionship. Today women can find any number of groups to belong to online, uniting even the most commonplace to the unequaled. It brings a sense of community and fosters relationships for woman bringing experienced and knowledgeable people who've 'been there, done that' to those who are just now heading down a new path.

People want to find purpose for their struggles. What better way to do that than to mentor others, to comfort others? Afterall, it's biblical.

2nd Corinthians 1:3-5Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the god of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God.

We want to comfort others. We desire to share the comfort we have received with those who are hurting. Our exposure needs a purpose. We desire a tribe. It's also a mom thing. Women are designed to nurture and take care of others.

I'm probably not unique in that I could stick myself in any number of group associations. But I'm probably not too common in regards to the types of clubs I could find myself trying to relate to. Wondering where I could share my experiences and where I could mentor others brings me to the question of which one should I choose? Where is my tribe? Where exactly do I fit in?

Unfortunately I could choose any one of these:

The Congenital Heart Defect group. My oldest daughter had a severe heart defect at birth resulting in congestive heart failure and open heart surgery before 6 months of age.

The miscarriage club

The multiple miscarriage club

The stillbirth club

The twin club

The infant death club

The twinless twin club

The micropreemie club

The cerebral palsy club

The rarer form of cerebral palsy club

The parent of a multiply disabled child club

The care-giver of your own parent club

Which one do I go with? I can't possibly go with them all. There's too many to choose from and I still feel some days that I shouldn't belong to a single one of them.

I believe God has made the choice obvious for me. He has opened the door for me in the area of special needs and continues to walk with me directing me through more doors, veering my life ever in the direction of supporting and encouraging those with special needs. I admit, I am amazed at how clearly he continues to direct my path in this area.

My pastor asked me the other day, "Did you ever think God would be having you do all of this and growing a ministry like this?"

15 July 2013

Something I don't talk about often is that I deal with disabled adults as well. I never imagined I would be working with disabilities at both ends of the age spectrum and in my own family .

My dad has dementia. He got it when he was only 47 and I was 27. It's a very young age to start having problems with remembering your own grandchildren's names and what state they live in. I wish I could say he had some rare condition that caused this to happen, but I can't. Because he did this to himself.

My dad was addicted to alcohol. He had been a functioning alcoholic all of my young life. His parents were alcoholics along with two of his siblings. But drinking a lot never interfered with his ability to work and never prevented him from being my daddy. He was what was considered a functioning alcoholic. He never missed a game and never appeared drunk. In my late teen years my parents divorced and that was when his slippery slope got out of his control.

I lived thousands of miles away from him at the time he started to lose it. I was living in southern California, he was in Missouri. At one point he didn't even have a phone so long periods of time went by without me speaking to him. After Shawn made a trip back to MO for work and checked in on him, he found him in a really bad state and we knew something needed to happen. We just didn't know what. He had brothers and sisters a few hours but no one wanted to help. They said he needed to hit rock bottom and then he would be ready for help. "What if rock bottom is death?" I had asked. Their answer was that rock bottom was death for some people and that might be what it was for my dad.

I didn't believe that. They just didn't even want to try.

We prayed about the situation. We brought it before our small group and had them pray with us. We knew this was a big deal. We didn't know exactly what was going on and why he was having such a hard time remembering things. We knew that with the issues he was facing, moving him in with us in CA would be life altering for all of us. I had only been living on my own with my husband for 8 years. We still had a young life to live and bringing in a sick parent was not something we wanted to take on lightly. Life for us would never, ever be the same.

So, we prayed for a sign. We needed to be sure.

When I found out he no longer had a job and hadn't for months, when he couldn't recall basic information, and when he told us he kept trying to get a hold of his mom (who had died the year before), we knew it was time.

We packed up our three little ones and drove the thousands of miles to MO to pack him up and move him in with us.

I was so angry at him for doing this to himself. I made him quit alcohol and tobacco cold turkey. I refused to have any of it around my children.

Once we got back to CA we got started right away on the process of discovering what was wrong. It would become clear to the Dr's upon speaking with my dad that things just weren't adding up. And when we finally got the psychological exam it was eye opening to say the least. Everything finally made perfect sense. They diagnosed my dad with Korsakoff's Syndrome. He had given himself dementia from his chronic alcohol abuse. They told us he would be able to get better with a proper diet and no more alcohol, but that he would never be the same.He would never be able to function with a real job again.

And he has never been the same. God has been so faithful to us as we've cared for my dad. It has not been easy. We've certainly had a hard road. It's been tough trying to raise our kids and deal with someone who has dementia. It took us a while to figure out the kids weren't lying, that it was my dad making up stories because he couldn't remember what really happened. They've learned sarcasm from him, something I hate. They've learned to try and get the last word, which I hate. But they've also learned some very valuable life lessons.

They see that you don't have to win an argument. It's ok to not have the last word.

They see first hand what abusing your body can do to you.

They've learned that God's mercy is granted even to those that seem beyond hope.

They've learned that while you can't pick your family, you can choose to love them anyway even when it's not easy to do, but because it's the right thing to do.

10 July 2013

I thought that being almost 6 years out from Liam's birth the mommy guilt wouldn't be a problem anymore. But, dang if it doesn't just creep in when you least expect it.

I belong to a group on facebook of moms of micropreemies. I had completely forgotten I was a part of this group until recently when facebook changed how posts come across. Now, every person who posts to this micropreemie group gets a front row seat in my feed. I usually ignore them because they are almost 99% of the time stories of "look at how good my 1 pounder is doing now" types of things and although I am very, very happy these kids are doing so well, it hurts my heart that Liam faces what he does.

Tonight though, a post came through about how this woman's water had broken at 18 weeks and she was pressured to abort. She fought the Dr's, hung in, and her child is doing fantastic.

Why would that give me guilt?

When I lost my mucous plug at 23 weeks and 6 days, I begged the Dr to put me in the Trendelenburg position to keep Liam and Brady in. The steroids take 24 hours to take affect and I'd only had them for a few hours. I knew they needed more time, but everything I knew was being thrown out the window by this nice, soft spoken Dr who said they needed to be delivered in a safe, prepared environment instead of birthing them spontaneously. He explained that if Liam broke the bag of waters it would be dangerous and they could better survive if they were taken by c-section.

I have mommy guilt because I feel I should have told the Dr no. Now, I know that this is a silly feeling to have because I don't know how things would have gone if I'd said no. But I do know that I might not be feeling guilty today if I had fought back then to give them more time in the womb. And it doesn't help to know other mothers in a very similar situation to mine were given more time and put in Trendelenburg. Liam's life might be more typical, his challenges might be minimal, Brady might be here... The what if's are terrible to go back and think about because I can't change anything that has happened.

08 July 2013

A whole 12 months will pass before Liam has to go for a GI check up. And do you know why that is? Because I switched this little man over to REAL food 5 months ago!

I love Dr. Williams. If you are in the Wilmington area or are even within a 2 hour driving range of the Nunnelee Clinic, I highly recommend him. He came in, sat down, and said, "I don't know what you are doing with this blenderized diet, but Liam looks awesome. His growth is fantastic, he is looking great on the charts. I don't need to see you for another year."

Woot!

Take a kid with complex needs, multiple doctors and multiple visits per year and you get a very satisfied momma when we get to eliminate one.

Liam has been on the blenderized diet long enough now that he is regular (first time in over a year) and we don't have to give any meds or suppositories any more. I can't remember the last time he threw up from reflux. And he has gotten huge. He has gained two pounds since we started and he's now 3'8" long. He is getting really awkward to carry around.

01 July 2013

Wow, has it really been a month? We finished up preschool for Liam with a meeting. We met, for the second time, with an AT team from Raleigh. They brought something called a PODD for us to work on communication with Liam. They said they have seen kids that they thought would never be able to use the system end up being able to use it. And they felt right off the bat that Liam would be able to do it. He was definitely interested in it when we worked with him at the meeting. They were prepping staff for using it with him for this next school year when I asked if I could take it home with me over the summer and work with him myself. They thought that was a great idea so I ended up leaving with the entire book.

The system is essentially pictures on each page that can lead you to other pages with more pictures in order to put together thoughts and sentences through pictures. It will force Liam to use his eyes for communication but since his awful eyesight is his strong skill, we are hoping it will help him to be able to visually scan and get his point across. The book consists of a 3 ring binder and 70 laminated pages full of pictures.

It also came with a bracelet that he is supposed to wear at all times. The idea is to teach him to raise his hand when he has something to say but he always raises his arms so we are going to have to come up with something different
for that.

All in all, it's a great idea. It is what we have been doing for years anyway, talking through pictures and having him make choices. Liam is just such a complex kid that the idea of anything working perfectly is a long shot. But that's also my negativity talking. He has blown us away so many times this might just be one of those instances.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.